Trust Your Instincts! New Study Reveals Gap Between Possible and Actual Autism Diagnosis

A study by Washington University professor Paul Shattuck, Ph.D. reveals that the average age of a child diagnosed with autism is six years old — that’s three to four years after a diagnosis is possible. Dr. Shattuck asks parents to trust their instincts, and follow up with any developmental concerns immediately. Closing the diagnosis gap will ensure that a child obtains the proper therapy and treatment as early as possible.

A note from Mae: Can you imagine the number of children who are mislabeled and misunderstood during those three to four years? Or those parents who blame themselves or their children for behavioral issues and delays?

See below to view the entire article or go directly to the Washington University website at http://news-info.wustl.edu/tips/page/normal/14077.html

Research shows wide age gap between possible and actual autism diagnosis
By Jessica Martin

May 4, 2009 — “Timely identification and diagnosis of an autism spectrum disorder (ASD) can impact a child’s development and is the key to opening the door to the services and therapies available to children with autism,” says Paul Shattuck, Ph.D., assistant professor at the George Warren Brown School of Social Work at Washington University in St. Louis. “Unfortunately, our research shows that the average age of autism diagnosis is nearly six years old, which is three to four years after diagnosis is possible.”

Shattuck is the lead author of an article on the timing of ASD identification in the current issue of the Journal of the American Academy of Child and Adolescent Psychiatry. He and study co-authors used data from 13 sites around the country that were funded by the Centers for Disease Control and Prevention (CDC) to collect information from the health and education records of eight year olds with a wide variety of developmental problems in 2002.

Shattuck’s research found that females were identified later than males and that early diagnosis was usually linked to a more severe or obvious cognitive impairment. There were no disparities in the age of diagnosis by race when the data are pooled from all 13 sites. However, in further analyses reported elsewhere, Shattuck and colleagues have found that Black and Hispanic children who meet diagnostic criteria for autism are much less likely to actually have a documented diagnosis in their records.

“This data shows that there is a critical need for further research, innovation, and improvement in the diagnosis and treatment of autism,” he says.

Shattuck’s upcoming research will look at the next series of CDC health and education data from 2004 and 2006 to see if there is an improvement in the average age of diagnosis. He has also received funding to study another important transition in the lives of children with autism — leaving high school and entering young adulthood.

“With the increased awareness about ASDs, I hope that we will start to see this gap shrink,” he says.

Shattuck says that parents need to trust their instincts. “If there is something about your child’s development that concerns you, or if your child is exhibiting some symptoms of autism such as a failure to make eye contact, not speaking one word by 16 months, or not responding to their name, talk to your child’s pediatrician,” he says. “If the doctor ignores your concerns, seek a second opinion.”

Editor’s note: Shattuck is available for phone, e-mail and broadcast interviews using Washington University’s free VYVX or ISDN lines. Please contact Jessica Martin at (314) 935-5251 for assistance.

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3 Responses to “Trust Your Instincts! New Study Reveals Gap Between Possible and Actual Autism Diagnosis”...

  1. admin says:

    From a child developmental psychologist, who wished to remain anonymous:

    Large children’s hospitals can be the biggest offenders of the “non-helpful” diagnosis. Unless a child never makes direct eye contact with another human being, the hospital group never gives an AS diagnosis, instead calling it “global developmental delay,” or worse, “complicated neuropsychological profile.” Try getting services with that on your neuropsych report! I end up giving these families the diagnosis so they can move forward with treatment. I have had to engage in “long talks” with my neuropsychologist collegues about this problem. Funny thing happened this week — a family who got the non-dx from the hospital came to me and, as their son was lining up marbles on my office rug, I told them I would dx him with PDD-NOS and he needed a speech language eval. So off to the hospital they go. The Speech specialist mentions I made the referral and “suggested a diagnosis of PDD-NOS.” The child’s language skills are much below average
    (some < 1%), and yet the specialist recommended he receive the limited services he gets in school and that the family engage in story telling at home to improve his skills. I just want to scream. So unfair to this child b/c he has behavioral issues that are a directly related to his inability to communicate.

  2. Barbara says:

    Just found your site through MiaHysteria. Excellent place you have here.

    I am in agreement with the delays in diagnosing – unnecessary, unhelpful, potentially harmful. I even use the term ‘grandma factor’. Grandmothers frequently know when an infant is showing developmental issues even if they cannot verbalize more than ’something is wrong’.

    I am reviewing a new book that adds to this dicussion – will post on it next week probably. Title: Alphabet Kids.

  3. admin says:

    Thanks Barbara. Looking forward to reading the book.
    -Mae

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L. Mae Wilkinson:

National Examiner for Autism and Education

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